The first time holding her was one of the happiest moments of my life. She was so sweet and tiny and all I wanted for her was to be healthy. We relied heavily on prayer to get us through each day and prayed to God that he would keep her with us. We had an overwhelming out pour of support from our families, church families and friends. It was overwhelming to see how one baby girl could make so many get on their knees; I joked and called her a prayer celebrity. We were devastated to find out that she would have to have surgery to survive in just a few short days following her birth. She would have to have a temporary surgery to sustain her life until she was big and strong enough to undergo a full repair of her heart defects. Aleah was born with two heart defects ventricular septal defect and pulmonary atresia. Pulmonary atresia is a form of congenital heart disease in which the pulmonary valve does not form properly. The pulmonary valve is an opening on the right side of the heart that regulates blood flow from the right ventricle (right side pumping chamber) to the lungs. In pulmonary atresia, a solid sheet of tissue forms where the valve opening should be, and the valve remains closed. Because of this defect, blood from the right side of the heart cannot go to the lungs to pick up oxygen. She was also born with ventricular septal defect which is a hole in between the two ventricles of the heart. At just nine days old Aleah had her very first heart surgery; I remember waking up early that day to go spend time with her before she has to go to the OR. I knew with each hour we were getting closer to handing our tiny fragile baby girl over to those surgeons and maybe never seeing her alive again. I wanted to hold her there in that rocking chair and stare at her precious little face and never let her go, the dreaded awful time came and we followed the surgical nurses to the OR to give what could be our last hugs and kisses to our precious Aleah. It seems like hours go by when you know your child is having major surgery. You jump every time someone comes through the door to give you an update not knowing if they are coming to tell you your child is gone. It agonizing to wait like that, but finally we got word she was finished and that we would be able to see her in an hour or so. Nothing I mean nothing can prepare you to see your child after having a major heart surgery. When we first walked in I was shocked at how bad she looked, it graphic terms she looked dead, lifeless, with a tons of machines pushing all types of medications into the many lines that were coming and going from her little arms, legs, feet and hands. The nurse started from her head and worked all the way down to her toes explaining all the lines and tubes she was covered in. The surgeon spoke with us and explained the surgery went well but that some babies will pass the first 72 hours after major heart operation and so we prayed this is all we could do after all our Aleah had been in God’s hand from the very start of all of this. It was very hard leaving her every night, and waiting to get that phone call that no parent wants to get, every time the phone rang my heart sank thinking this is the phone call telling us she’s gone. Our baby girl fought so hard and was so strong she overcame the odds and she made it through those first three days. Each day she continued to improve until she was able to come back to our local children’s hospital where she stayed in the NICU for another four weeks. When she came home after spending six weeks in the hospital and having a major heart operation at nine days old we were so thankful and happy to finally having her sleeping under the same roof that we were. Wow did we have a hard time adjusting to having a baby girl with so many medical needs. She had at least three doctor appointments every week and because she was so week and fragile she struggled to eat and gain weight. When she had her first heart operation we were told that she would need another heart operation between the ages of 9 months to a 1 year old to do her full repair of her heart. The day loomed in my mind, the thought of having to hand her over again not knowing if she would make it through, it weighed so heavy on my shoulders. The days and weeks passed by and when she was just seven months old it was decided that her health was deteriorating too quickly and she needed her second operation sooner than we had expected. Now I knew of some what to expect with the second surgery but that did make it any easier handing her over once again. I knew what she had been through before with her first heart operation and my heart ached at the thought of her having to recover from a second more severe heart surgery. The day came and I had to carry her to the OR doors, I wanted to turn and run away with her and keep her safe but I knew that this had to be done. It was one of the hardest things I have ever had to do. Hand over my baby girl to the surgical nurses once again and pray the surgeons would save her life. I handed her and her little frog pacifier over, gave her hugs and kisses and said goodbye. I just about collapsed there in the hallway; it was heart breaking thinking maybe she wouldn’t make it through. After several hours in surgery and the final word things went well we were able to see her. We walked in and it was the same picture, our little girl being sustained but so many machines and so many lines coming to and from her little body. We were in there about 10 minutes when alarms starting going off and the nurse went over and starting bagging her, she told the other nurse to get the doctor; my little girl was turning blue. My heart sank as I stood by her bed and just watched in horror. I prayed to God please don’t take her. They were able to get her stable and the alarms stopped and her color came back. I thought right then and there I had lost my baby girl. Once again she fought so hard and God intervened. Aleah had a much rougher time this time around. The kept her intubated for longer than normal waiting for a surgery date for her feeding tube. Many children born with congenital heart defects cannot sustain themselves by just bottle feeding because of their heart defects. Most kids have nasal gastric tubes but my Aleah could not tolerate them so they decided to put in a feeding tube in her tummy called a G-tube. She fought the vent so they had to keep her sedated with morphine until her g-tube surgery. She had her g-tube surgery four days after her heart surgery. She had been on the morphine for so long that when they tried getting her off of it she was having withdrawals; this was awful she would just scream and cry no matter what we did for her. Finally she overcame yet another of so many obstacles placed before her and with each day she became stronger. After two months in the hospital we were finally able to bring her home once again. We have been on this roller coaster ride for almost four years now, as Aleah will turn 4 years old on September 10th 2011. This life is one we would never want other parents to have to live but we are so thankful to have our little girl here with us. Aleah has taught us all to never give up hope, hope in God and hope in our prayers. Prayers of loved ones and the mercy of God is what got our little girl through all she has been through and us for that matter. God got us through the darkest of times, even when things looked hopeless. She has taught us what is most important in life and to cherish the little moments in life, appreciate each day you’re given and to never take for granted the ones you love. She makes all of us smile each day and we thank God and appreciate the simple things in life. Each day is a blessing to us and having her here is nothing short of a miracle.

My name is Ashley I am the mother to a beautiful little girl named Aleah. Aleah was born with life threatening birth defects, we never expected to have her here with us and here she is bringing joy to our lives everytime we look at her. I am so thankful to be her mommy and although life can be very hard with a sick child, I wouldnt trade being her mommy for anything in this world!!